SARAH'S STORY

Four years ago, Wendy and Howard Grant were new parents eagerly planning the next 20 years of their lives. A year earlier, they had welcomed their first child, a beautiful little girl named Sarah. Howard had just completed the UCLA screenwriting program and an internship at Sundance Institute. He was excited about starting his new career.

All of these plans ended abruptly when Sarah was 14 months old. That is when she was diagnosed with acute lymphoblastic leukemia.

"We went from dreaming about Sarah's graduation and wedding day to thinking, 'Okay, what are we going to do tomorrow'", Wendy remembers.

Acute lymphoblastic leukemia is the most common type of leukemia in children. With an overall survival rate of 80 percent to 85 percent, it is also one of the most curable.

There was never a question that Sarah would go anywhere but to The CHOC Cancer Institute. Her mother is a clinical manager at the St. Joseph Hospital Outpatient Surgery Center, which is located next door to CHOC. With her nursing experience, Wendy knows what to look for in terms of clinical quality. Howard also called his aunt, a Denver pathologist, who assured them that CHOC is one of the best hospitals for treating childhood cancer.

The Grants were also quickly faced with another important decision. With Sarah's special needs, one of them needed to stay home and provide full-time care for her. Howard put his screenwriting dreams on hold.

For the next 26 months, Sarah received both inpatient and outpatient treatment at CHOC. She finished in November 2002, but her remission proved to be short-lived. Soon after her last chemotherapy treatment, cancer cells were detected in her left eye. This meant Sarah needed a new, more aggressive treatment regimen.

"Even though modern chemotherapy usually achieves dramatic success in the treatment of newly diagnosed pediatric cancer, the patients who relapse or do not respond to the therapy represent a great challenge," says Sarah's physician, CHOC pediatric oncologist Ivan Kirov, M.D. "The CHOC Cancer Institute develops individualized protocols for treating patients with recurrent cancer."

The CHOC Cancer Institute is the only Orange County hospital providing cutting-edge treatment for children and adolescents whose cancer has returned. CHOC has access to the newest treatment approaches based on the latest research, including phase I and II clinical trials. CHOC is also part of Children's Oncology Group, which coordinates and guides the treatment of pediatric malignancies through innovative clinical trials. This cooperative clinical trials group is supported by the National Cancer Institute.

"Because of the unusual type of relapse she had, Sarah was placed on one of the most aggressive treatment protocols," Dr. Kirov says.

Sarah spends every other week at CHOC. During her hospitalizations, Howard is at her side by 6 a.m., and spends the entire day and evening with her. After Wendy gets off work, she joins Sarah and Howard at CHOC, where she spends the night. Howard usually stays until about 11 p.m., after both Sarah and Wendy have fallen asleep. Then he goes over to the Ronald McDonald House, located a short walk from CHOC. The Ronald McDonald House provides the Grant family with a much-needed respite during those emotionally and physically trying times.

"The Ronald McDonald House is a safe haven. Since my husband does not have to rush back home to Huntington Beach, we get family time in the evening that we otherwise would not have," Wendy says.

Sarah's intense treatment will continue until March 2005, but Wendy and Howard know there will be other issues in the years ahead. Today, more than 75 percent of children diagnosed with cancer survive, but as many as two-thirds of them may experience at least one late side effect as a result of treatment. Sarah has already experienced some learning delay and gross motor coordination issues. She is undergoing occupational and speech therapy at CHOC.

Some side effects may not show up until adolescence or early adulthood. The CHOC Cancer Institute provides long-term follow-up for patients who have completed chemotherapy in order to screen, identify and treat these late side effects as early as possible. Sarah will receive a customized treatment plan outlining potential complications, screening guidelines, lifestyle counseling and other follow-up care recommendations for the rest of her life.

With the completion of treatment only months away, Wendy and Howard Grant are once again looking toward the future.

"As a nurse, I have higher expectations than other parents. Sarah's doctor has been remarkable. He went above and beyond to make sure Sarah would be treated the way she really needed to be treated," Wendy says. "We have had so many blessings come out of this. We now live our lives moment-by-moment, not day-by-day. We take every opportunity to enjoy Sarah and to have as much fun with her as we can."